A Forum For Those Touched By Pallister-Killian Syndrome
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Gita Pinto
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Gita Pinto's Discussions
Anterior Anus
Replied Aug 30
Anterior Anus
13 Replies
Started this discussion. Last reply by Tom Amber and Shelby Sep 4.
Head Shaping
2 Replies
Started this discussion. Last reply by claire wilkins Aug 31.
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Gita, this sounds awful. What a worry. I'm sorry, I can't give you any advice, but I do really feel for you. Big hugs, and I hope you find out what's causing this soon xxx
Hi, my daughter Haley has also been on miralax for years. It really does seem to help as prior to this it was extremely difficult for Haley to have bowel movements. I have been able to tweek it on certain days when she needs more or less. We put i...
My girl hates tummy time too and because Mommy gives in to her crying so easily, I rarely gave her tummy time. As a result, she has a pretty flat head. I feel so bad, can't do anything now, she's almost 11 months.
Kelsey has always had bowel problems. We are putting off surgery until she is older. Unless it becomes a problem of pain when having a bowel movement. We are getting ready to put her on miralax powder to help with constipation. This is a common pr...
Francesca is almost 11 months old. She had found her own rythym with sleeping, eating, napping, and even bowel movements around 5 months. Her behavior and needs were so predictable. Then she had a surgery to correct her anterior anus 2 months ago....
Kaden has trouble sleeping too, I can put him to bed around 9 pm and he'll wake up about 2:30 am wanting to eat sometimes not wanting to go back to sleep, if he does he usually get up again around 8 am to eat again, he doesn't like to nap at all. ...
Hang in there Gita; Alex is the same way. He goes thru periods or phases where he sleeps thru the entire night but then goes thru phases where he doesn't want to go sleep until the early morning hours. When he sleeps thru the whole night, it's gre...
Lucy was exactly the same but she was awake from day one. She's seven and a half now and her sleep pattern is much improved (maybe waking once or twice a night, sometimes sleeping all night), and it has gradually improved over the years. I can't r...
All i can say is same here! lol..Kennedy is 22 months and she still wakes 2 a week. She usually sleeps through the night but its those 2 random nights she is is up trying to "talk" and keep up noise. When she was in daycare she slept all night ( w...
Francesca started sleeping through the nights at around 5 months. She slept from 11:00 p.m. until 7:00 or 8:00 a.m. Then at 8 months, everything totally changed. She has been waking up about 20-30 times a night. She sleeps from 11:00 p.m. - 12:30 ...
Glad you're home and everything is better.
Your final comment really tugged at my heart Gita - our children are so brave, aren't they?
Me too Gita---I hope she continues to feel and act better! xo
Aww- I am sorry to hear this. But glad Francesca is feeling up to smiling and chatting:-)
An update on where we are. We just got back from the hospital. What an ordeal. Francesca had a surgery to correct her anterior anus. We were supposed to be at the hospital for a week and on the seventh day, her stiches started to come apart. Unfor...
Profile Information
- What is your child's name?
- Francesca
- How old is he or she?
- 8 months
- At what age was your child diagnosed with PKS?
- May 20, 2009
- How long ago was the diagnosis?
- 3 months
Gita Pinto's Photos
Gita Pinto's Blog
In desparate need of advice
Francesca is almost 11 months old. She had found her own rythym with sleeping, eating, napping, and even bowel movements around 5 months. Her behavior and needs were so predictable. Then she had a surgery to correct her anterior anus 2 months ago. Since then, life has been a nightmare. Nothing is predictable. She's on a liquid diet only until fully healed, her sleep patterns are way off, and her bowels don't seem to be functioning anymore. The past 3 weeks have been the worst. She goes days with… Continue
Posted on November 18, 2009 at 2:08pm — 3 Comments
sleep patterns
Francesca started sleeping through the nights at around 5 months. She slept from 11:00 p.m. until 7:00 or 8:00 a.m. Then at 8 months, everything totally changed. She has been waking up about 20-30 times a night. She sleeps from 12:00 p.m. - 12:30 a.m. Then she wakes up every 10-15-20 minutes for a few hours. Sometimes this goes on until about 5:00 a.m., sometimes later. She finally sleeps again until 8:00 a.m., feeds, then goes back to sleep until noon.
This new sleep cycle is really exhausting… Continue
This new sleep cycle is really exhausting… Continue
Posted on October 10, 2009 at 12:00pm — 4 Comments
Surgery
An update on where we are. We just got back from the hospital. What an ordeal. Francesca had a surgery to correct her anterior anus. We were supposed to be at the hospital for a week and on the seventh day, her stiches started to come apart. Unfortunately, all of the them came out and now it'll be several weeks before she's healed. Only then will we know if the surgery actually helped or if she'll need another operation.
Anyways, the good news is she's interacting more, smiling more, and making… Continue
Anyways, the good news is she's interacting more, smiling more, and making… Continue
Posted on September 28, 2009 at 2:00pm — 3 Comments
Comment Wall (10 comments)
- At 9:30am on November 13, 2009,
Kelsey/ cammie said…
- Hello Gita
My name is Cammie Gray I am a parent of a PKS Kid and a board member. Just a update on the 2010 Medical Conference for families with PKS Kids. This year the board has come up with a way to help families meet the financial need for attending the conference. If you are interested in attending and have questions on how this works please contact me at cammie_gray@hotmail.com
Everything will be keep confidential
- At 7:28pm on September 2, 2009,
Noelle & Nasaya Coleman said… - Thanks......yeah she does well with holding her head up but she's def not pushing up with her arms tho......she barely moves them when shes on her stomach but she is doing wonderfully......Loving the pics of ur daughter just tooooo cute.
- At 2:43pm on September 2, 2009,
Alexander (Mommy=Blanca) said…
- Hi Gita; i enjoyed seeing all of Francesca's pics; she is so precious. I'm Blanca, Mom to Alex.
- At 9:28pm on August 28, 2009,
Elizabeth & Anthony said… - Hi Gita! Both of your children are adorable. We look forward to learning more about Francesca and hope to meet you at the PKS conference next year! Feel free to ask questions and we'll do our best to help you!! Again, welcome to the group!
- At 12:26pm on August 28, 2009,
Noelle & Nasaya Coleman said…
- Welcome....Your pictures r adorable....I have a 5mth old daughter Nasaya that has PKS....Looking forward to hearing ur daughters progress I like to compare notes bcause my daughter is so young as well and I'm fairly new 2 this.
- At 2:51am on August 28, 2009,
Tom Amber and Shelby said… - I love all the pictures!! I just want to love on her!! I am Shelbys mom! Shelby is 9 months old. Welcome to group!
- At 1:21am on August 27, 2009,
Anna Randell said… - Welcome Gita, looking forward to getting to know you better.
- At 5:47pm on August 25, 2009,
Barclay family said… - Gita there is also a "Canadians" group under the groups tab at the top of the page, feel free to join in there as well.
- At 5:42pm on August 25, 2009,
Barclay family said…
- Welcome, Bienvenue, Gita and Francesca! We look forward to more about you both.
- At 8:48am on August 25, 2009,
Gretchen & Simon said…
- I love the name Francesca :) I think you'll find lots of help and friends here--glad to know you!!!
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